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Ask the Doctor 2013 Number 6 (November/December)

Disclaimer: neither the doctors below nor BEBRF nor members of the BEBRF Medical Advisory Board has examined these patients and are not responsible for any treatment.

This set of Q and A came from the panel discussions at the BEBRF Symposium in San Diego on August 10, 2013. Doctors answering questions were: Peter Savino, M.D.; Bobby S. Korn, M.D., Ph.D.; Allan Wu, M.D.; Russell P. Edwards, M.D.; Natalie A. Afshari, M.D.; Benjamin Frishberg, M.D.; Don O. Kikkawa, M.D.

Q: Is there any known connection between Parkinson’s disease and dystonias?

A (Wu): Dystonia is a disorder on its own; Parkinson’s disease, however, often presents with symptoms of dystonia.

Q: Is CAT scanning of any use in the investigation of blepharospasm?

A (Wu): It’s not in clinical use; it is used in Parkinson’s in certain conditions.

Q: What about acupuncture?

A: Responses from the Panel and the audience: Some people get temporary relief, no reports of long term benefit.

Q: Is there any way to prolong the effects of injections?

A (Edwards): Zytaze® is being marketed that way. There are mixed results so far.

Q: Are there any recommendations for a good time to have cataract surgery regarding BOTOX® and blepharospasm?

A (Afshari): There is no reason not to do it; we watch the surface carefully because of dry eye, but the lens is inside the eye so it is not an issue.

A (Edwards): There are no real timing issues, but it might be more comfortable a few weeks after BoNT injections.

Q: On the issue of maximum number of units - some doctors refuse to give more than 50 units; another patient asks "Is the 150 units I’m getting too much?"

A (Frishberg): Many patients require more than 50 units and up to 100 without issues. At a recent Neurology Academy meeting, the topic was discussed, and there were many there that injected at the higher levels.

A (Edwards): agrees. If BOTOX® is not effective at that level, he considers myectomy a reasonable option. Myectomy won’t cure it, but gives better control with botulinum toxin afterwards.

Q: Dr. Savino asked the panel about patients that say it isn’t working. He also asked the panel if they had seen a real remission.

A: Dr. Edwards: No, he has never seen a real remission. He has seen people with Meige-like symptoms that went away after a few rounds of injections, but never someone with blepharospasm. The panel discussed the topic, reflecting on the view that there were no real papers supporting successful remission. Dr. Savino feels Apraxia is often the culprit when patients say injections do not work. He also stressed the point that there is often confusion between the injections weakening the muscles and the injections relieving the symptoms. His view is that the muscles are always weakened, but there was some other reason that the injections did not always relieve the symptoms. So often, there is confusion between "it didn’t work" and "it didn’t produce the wanted result."

Q: Is there a specific interval between shots?

A: Edwards: If a patient isn’t getting the results he wants, the doctor needs to analyze why that is. Basically, he tailors his injection frequency to the patient. If he sees some areas that are still twitching, he will consider doing touch-up injections. Dr. Frishberg: Originally, there was concern about the development of antibodies because of proteins in the toxin, which has mostly gone away after reformulation in the 1990s. He doesn’t do touch up injections but will do it at 7 or 8 weeks. Dr. Wu: He also doesn’t do touch ups, but will decrease time between injections, depending on individual cases. He has seen a couple of cases of true resistance. He uses a test injection in the frontalis to show if the toxin is weakening the muscles. Dr. Savino: Some people, after more frequent injections, if results are not good, he will sometimes hold off on injecting for 3 months, until the muscles have strengthened. He usually gets success after that.

Q: There were several questions about Restasis eye drops passed to Dr. Afshari.

A (Afshari): Restasis is a cyclosporine in a weak form used as an anti-inflammatory. It’s okay to stay on it for many months, and she would normally expect a follow-up exam at 6 month intervals. She likes to see if the patient can do without if after a year or so. It typically takes a month or so to work, but even then, it only works for some people and not others. Some people find it uncomfortable.

Q: Is there a contact lens to wear while sleeping?

A: (Afshari): There is a type of contact lens called a bandage lens, which covers the cornea and has high moisture content. These are non-prescription, and there are several types with different size, thickness and water content. These reduce the amount of tear evaporation. They need to be loose fitting so oxygen can enter between blinks.

Q: What is a meibomian occulation?

A (Afshari): It’s a process for opening the meibomian glands – was done via needle, can be done by laser, but compresses and massage are more in use.

Q: Can vitamins hurt or help blepharospasm in any way?

A: "Like chicken soup, it can’t hurt"

Q: How do you pick which artificial tear to use?

A: Afshari: Ideally, use preservative free drops if possible – the individual use ones. Unfortunately, they are more expensive. No one brand is recommended. Dr. Edwards: I show patients Nature’s Tears spray. He finds it useful sometimes as some patients find it easier to insert. The best way to put drops in is by pulling the lower lid out and putting drops in the bucket.

Q: Can blepharospasm cause headaches?

A (Frishberg): He has not seen it, even though headache is one of his specialties; he has seen people with blepharospasm and migraine, though not a cause-effect relationship.

Q: Puffiness from injections in lower lids - do you see it? Is there any technique to recommend?

A (Panel): – We don’t see this and are not clear why this should happen. Dr. Edwards speculates that weakened muscles may not pump fluid away as well.

Q: Are there any exercises that can be done to improve muscle/eye coordination or ameliorate blepharospasm?

A (Wu): We’ve thought about that quite a bit, and there are certainly exercises that are used for hand and other dystonias, but we don’t have as many things to do to train eyes and lids.

Q: Can whiplash or another similar injury cause blepharospasm?

A (Wu): I can’t see a clear link.

Q: Should a blepharospasm patient have Lasik surgery?

A (Afshari): I don’t normally recommend it because of Lasik’s dry eye side effects.

Q: Does BOTOX® migrate when you inject?

A: Yes

Q: Can it migrate into the optic nerve and affect eyesight?

A: Dr. Edwards: Yes and no. It can’t migrate into the optic nerve and cause damage, but it can cause blurred vision; it can cause ptosis if it impacts the eyelid opening muscles; also diplopia (double vision) can occur if the toxin migrates into the muscles controlling eye movement. Dr. Savino feels ptosis is easily avoidable by injecting away from the vulnerable location. He says his biggest complication is hematoma – accidentally hitting a blood vessel and causing a bruise. Dr. Wu: It’s clear that botulinum neurotoxin injections are safe, but it does track back along the nerve to the central nervous system. There is no clinical impact of that however, says Dr. Savino.

Q: What is the foundation doing about training optometrists, ophthalmologists and neurologists about blepharospasm?

A: Mary Lou Thompson, BEBRF President: We have displays at the American Academy of Neurology’s and the American Academy of Ophthalmology’s annual meetings where we show videos, offer our materials, and talk to many physicians from all around the world. There are also connected sessions at these meetings. In addition, the BEBRF newsletters go to the doctors, and that seems to be well accepted by them, especially the "Ask the Doctor" section where your questions are posted with responses from physicians such as those on the BEBRF Medical Advisory Board. As Dr. Korn said, patients are also the best teachers of doctors, who learn a lot from them. Dr. Savino: I agree, I learned more from patients’ support sessions in Philadelphia – and also remember that the BEBRF funds research, including that of Dr. Wu who is here today. Dr. Edwards: He commented further on the issue of delayed diagnosis. His point was that dry eye is so frequent (perhaps a quarter of the population), and blepharospasm so rare, that it’s not surprising most physicians know about dry eye as a cause of blinking, and likely are doing a correct workup on the dry eye aspect that is present, but unaware of the possibility of blepharospasm.

Q: Someone has had a myectomy but now has apraxia of lid opening. What would you suggest?

A (Kikkawa): I would need to see the patient, but if it is severe, we would consider a frontalis suspension procedure. If mild, perhaps an eyelid tightening would be helpful. We would also need to review the botulinum neurotoxin injection detail for the patient and assess that before doing eyelid surgery.

Q: What about pain in an eye related to blepharospasm?

A (Wu): Blepharospasm in itself is not a painful disorder, so the full picture needs to be investigated to understand what it is that’s causing the pain and how it relates to the blepharospasm.

Q: Is memory loss related to BEB?

A (Wu): I don’t know of any pathophysiological relationship.

Q: What about sensitivity of the tongue to food?

A (Wu): A fascinating question, but nothing to add.

Q: What is the success rate for a limited myectomy?

A (Kikkawa): For patients who were non-functional before the procedure, most go from non-functional to functional and often need only a reduced level of botulinum neurotoxin. We need to remember that ongoing injections will most likely be needed. By and large, most patients have improvement, but again, this is a last resort procedure for when other things don’t work. Also, note the downsides I referred to in my talk, such as dry eye impact.

Q: Do any of the panel offer patients some form of anesthetic before injections?

A: The panel response was mixed; some offer it to their patients, others don’t.

Q: If using BOTOX®, why not use the 50 unit BOTOX® Cosmetic vial rather than the 100 unit vial, which can result in waste?

A: Because insurers will not reimburse for the vial labeled cosmetic (even though it is exactly the same BOTOX® as the larger vial labeled BOTOX® Medical).

Q: Is a frontalis sling contraindicated after myectomy because of lagophthalmos (the inability to close the eyelids completely)?

A (Kikkawa): I would not suggest it for people with severe lagophthalmos, but if less severe, then it would not be contraindicated. He noted that a frontalis sling can be adjusted in the office after the procedure, to loosen or tighten it, so it can be tailored to a particular situation.

Q: Are there things that I can do after getting the injections that are good to do?

A (Panel): The more likely things are what not to do. For example, don’t rub the eyes, as that may cause the toxin to disperse differently from what the doctor is targeting. Putting ice on the area is ok if you are a bruiser; taking a nap won’t hurt, but don’t take a nap lying on one side, again because of diffusion.

Q: Are any nutritional factors associated with blepharospasm?

A (Panel): Nothing specific.

Q: Do you advise discontinuing blood thinners before injections?

A (Panel): No, we presume people are on them for a good medical reason.

Q: What effect does age have on blink function?

A (Wu): We can speculate that it might be a correlating factor – we know blepharospasm is more prevalent with age, and that dopamine neurons decrease as we age.

Q: BOTOX® didn’t work; I also had a limited myectomy; what is there to try next?

A: Dr. Savino re-emphasized his view that the botulinum toxin shots almost invariably cause weakening of the muscles, so the issue then becomes why that doesn’t decrease the spasm in these cases. Dr. Edwards: I test for other global eye or medical issues including dry eye and blepharitis. I get patients to try blue-blocking lenses, and find out what they mean by "not working." After all that, I think about whether a sling procedure might be applicable. Dr. Afshari: Blepharitis itself shouldn’t cause blinking. After all, a large part of the population has it without having the excessive blinking problem. Dr. Kikkawa: After a myectomy, the injection locations should be changed. After all, there is no muscle left in the upper lid; so emphasis might need to change the injections to the lower lid, or to finding a new injection pattern. He noted that he has had some patients who, after a myectomy, still needed up to 100 units. He would also look carefully for apraxia. So in summary, try different injection patterns; maximize the amount of the neurotoxin injected; try different neurotoxins, and check for apraxia.

Q: Injections for Meige: how to treat and inject.

A (Frishberg): You have to be very careful when injecting in the lower facial area. He finds that sometimes the injections needed around the eyes for blepharospasm actually helps lower areas. He tries to be very careful when he has to go to lower face shots, but there is no particular location in the lower face he doesn’t inject.

Q: Does Meige improve incidentally to a myectomy – and/or after eyelid injections for blepharospasm?

A: Dr. Kikkawa: I don’t remember that happening after a myectomy. He commented that myectomies are actually quite a rare procedure. Dr. Edwards: I have seen Meige improvements after eye shots. Dr. Savino: Sometimes people use the lower muscles when fighting blepharospasm, and the involvement of those lower muscles can look like Meige, in which case fixing the eyes can help.

Q: Does eye drop use lead to the need for more in future?

A (Afshari): Not really, certainly not with plain lubricant drops.

Q: A patient suffers a flattening of the upper lip after injections. Is this normal or common?

A (Kikkawa): If injections are given low down in the face then, on rare occasions, it can impact the lip that way. It should not happen with shots in the orbicularis oculi muscle around the eyes. Dr. Savino says he saw one instance of it during the Dysport® trial.

Q: Can BOTOX® cause permanent damage to the muscles?

A: Dr. Wu: No. The junctions between the nerve and the muscles regrow, and, though there are microscopic changes as a result, many years of treatment with botulinum toxin does not show any clinically significant change; Dr. Edwards remembers a study a while ago that implied a slight reduction in muscle strength, but it does not cause any clinically significant problem.

Q: Can dry mouth be attributed to, or linked with blepharospasm?

A: Dr. Afshari: The presence of dry mouth and dry eye is a strong indicator for Sjogren’s syndrome, not a link to blepharospasm. She would do a thorough work up to see if Sjogren’s (or some other rarer problem) might be the issue.

Q: Can Deep Brain Stimulation (DBS) be used for blepharospasm?

A (Wu): I’m not aware of its use specifically for blepharospasm. It is used for Parkinson’s and generalized dystonia (GD); it is FDA approved for Parkinson’s and for compassionate use for GD. It has been used for Meige and Cervical Dystonia when they are severely non-responsive to other treatments.

Q: Why is dystonia so task-specific? For example, someone that can talk without blinking, but be handicapped by blinking in other aspects of life like watching TV, driving etc.

A (Wu): It’s a fascinating aspect of dystonia; it’s not a muscular thing as we can test and show that the muscles function properly. The problem comes from brain signals. An example is in hand dystonia where the hand freezes for writing but allows typing – so no issue with the muscle itself. Similarly with musician’s dystonia.

Q: Why is light sensitivity such a major component of blepharospasm? Is blepharospasm causing light sensitivity, or is it the other way around – or neither?

A (Wu): I think the blink reflex is tied to light sensitivity – as it can be to dry eye. Any blink is the result of a complex set of interactions that form a loop of stimulate around the eye. But beyond that, there is no current hypothesis.

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